By Dr. Andrew Ashley, in response to Comparison of treatments for chronic fatigue syndrome - the PACE trial -tomorrow at 8:30 AM on ABC radio.
The following response was submitted to ABC radio by Dr. Ashley, but for whatever reason, this comment hasn't been published/posted on their site as of yet.
Dear Dr Swan,
I noticed the following two things about the PACE trial and about yourself on your site. "While this trial actually has some good news, the reactions from some people who claim to represent patients has been extraordinary."
"A famous example of Dr Swan's work is his much publicised and controversial investigative program on scientific fraud and the well-known gynaecologist Dr William McBride. The program exposed fraudulent research, sending shock waves throughout the medical world and led to Dr William McBride being de-registered. It earned Dr Swan the 1988 Australian Writers' Guild Award for best documentary and a Gold Walkley."
The PACE trial used the Oxford criteria to select their patients, these criteria were used because they exclude ME/CFS patients. So the so-called ME/CFS PACE trial was done without ME/CFS patients.
Now, there are many other problems with the PACE trial, but let me just mention one.
The principal investigator Prof White published an article in 2004 that exercise in ME/CFS causes Immunological damage which one can measure by doing a blood test (cytokines).
Also the Pacific Fatigue Laboratory, to mention another study, compared repeat exercise testing in healthy subjects, couch potatoes, and people with ME/CFS, and they showed that Metabolic dysfunction causes Post-Exertional malaise in ME/CFS and that all controls, even couch potatoes, recovered within 48 hours after exercise yet only one person with ME/CFS recovered within this time frame. One would have expected that The PACE trial, a trial that costed £5 million, would have checked those cytokines or done the same thing as the Pacific Fatigue Laboratory.
But I'm afraid that didn't happen for two reasons.
The first one is that Prof White and other CBT psychiatrists have been spending the last few decades, denying the existence of ME/CFS and blaming the patience for hysteria, malingering, false illness beliefs etc and making sure that no doctor knows that ME/CFS has been classified by the WHO as a neurological illness since 1969.
If they would have done these tests, people would have found out that yes indeed there are physical abnormalities in ME/CFS. The other reason is that if the PACE trial participants had undergone these tests, then everybody would have found out that there were NO ME/CFS patients in the PACE trial.
And the CBT psychiatrists didn't want that to happen as the outcome of the trial was a foregone conclusion.
Prof White has been saying for years that at least 25% of ME/CFS are cured with exercise/ CBT and the Dutch CBT psychiatrists have been saying for years that they cure 70% with these treatments.
But as you can see even the PACE trial comes to the conclusion that nobody gets cured by these treatments.
So, maybe you could highlight the fact that it is now time to start funding proper biomedical research to find the cause and proper treatment for this severely disabling disease.
25% of ME/CFS patients are bedridden and totally dependent on others and many are even tube fed . Just some other information about ME/CFS that you might not know about:
almost 5% of patients in a study of 752 ME/CFS patients developed ME/CFS after a blood transfusion.
the lifespan of ME/CFS subjects is 24 years shorter than in healthy subjects
there is a Highly increased incidence of non-Hodgkin's lymphoma in ME/CFS (the incidence rate of non-Hodgkin's lymphoma in the United States is 0.02%, yet nearly 5% of ME/CFS patients develope the disease.)
After one of the cluster outbreaks of ME/CFS in Adelaide, researchers/doctors managed to transfer the putative agent of ME/CFS to monkeys yet hardly anybody knows that ME/CFS is an infectious disease.
The PACE trial concluded that exercise, and CBT are safe in ME/CFS. Yet, many ME/CFS patients have been made a lot worse/ ended up being bedridden thanks to these therapies as you are forced not to listen to the signals from your body/muscles that things are seriously wrong.
It's like being forced to continue to drive with a flat tire because the CBT psychiatrist says there is nothing wrong with the tire/car.
As one can imagine, the longer you continue to drive, the more damage you do to your car. So these therapies go directly against the do no harm principle that all doctors should use when treating patients.
Any doctor, who from now on will use these therapies on ME/CFS patients will be at risk of being sued/having a complaint lodged against them with their medical board. This is not good for doctors and not good for patients either. Doctors should help/cure their patients, not make them a lot worse.
To come back to the other quote at the beginning, most ME/CFS patients are under the impression that the PACE trial has much in common with your Dr William McBride and that's why you might think their reactions have been extraordinary. But I would imagine the same thing happened when you were investigating Dr McBride and exposing his so-called research.
Dr. Andrew Ashley